Tuesday 22nd March – Another date with John, my oncologist. Did you know that the word oncology comes from the Greek word meaning “mass” or “bulk”? Learn something
new every day. First the lovely Sinead comes in with her doe eyes. She asks how I am and is quite surprised when I tell her how well I’m feeling and the amount of golf I am playing. Surprised now isn’t the word, shocked more like it. Apparently I’m supposed to be looking after my leg following such a major operation, have to mind any cuts or grazes, rest it, keep it elevated at night and gently massage upwards to keep the lymphatic system working. Well it will keep me out of the rough, memo to self – make sure to keep ball on the fairways you’ve a reason now not to go poking in gorse and briars! I’m beginning to think I should be taking this more serious than I am. Well I do want to get on with my life. Regarding the massage, that’s at odds with what I was told by a lymphatic nurse last week.
She said that they are slow to do lymphatic massage on melanoma patients because we are always considered live and there is a threat to massaging it into the lymphatic system. Oh wish there was just one person with a handle on melanoma. Don’t like these cross messages.

Being the vain person that I am, I ask Sinead will I be able to continue highlighting my hair once I start interferon. She advises to get it done before I start and to drag out as long as possible, which I do anyway for cost reasons. She goes on to explain that there is hair thinning with interferon, aha knew John was playing side effects down, and that I would have to be conscious of using good quality products with lots of protein and getting regular treatments. I continue to ask her about holidays and travelling with medication which I now know I’ll be able to collect from the pharmacy at no cost to me. It needs to
be kept in a cool bag and they will give me a letter for travelling abroad. I do think Sinead thinks I’m a bit mad, probably not the sort of person she usually meets, when I’m finished
she is always there with practically the box of tissues in her hand in case I need them – she doesn’t know me yet!

John arrives, totally as I expected all my tests are fine from the previous week. He asks if I’ve thought any more about interferon, I didn’t think I’d a choice, it’s interferon or nothing and if it even gives me 1% chance of these cancer cells not clumping I’ll bloody well take it. Side effects I can deal with just stop this thing returning. He explains that they will start me at 3 mill, I will have bloods done every 6 weeks, God help the phlebotomy team, see him when dosage will be increased and then scans every 6 months.
Again this is at odds with what he said before, last time it was starting at 2 mill increasing every 4 weeks – wish they’d all make up their minds. He asked if I’d seen the general
surgeon yet. No that appointment was supposed to be made for me, so letter to be sent over with my ultrasound results, now for the shock, John and other doctors I’ve spoken to, want me to have a sentinel node biopsy, this guy they’re now sending me to is a breast man and does the underarm sentinel node biopsies but isn’t over the moon about doing legs. He may decide not to do it. Now I’m confused, if everyone wants me to have one why don’t they send me to someone who will do it happily. I am not the only person in the country with this bloody thing, though it looks like I am the only person with this history,
still there must be another surgeon that John is happy to refer me to who will do it. So back to playing another waiting game, wait for the phone call either for an appointment with him or day therapy, then he will decide to proceed or not, then we wait for results if we have to then set up interferon. As we have leaving cert in the house and by my timeline we are now looking at the beginning of May I ask if this can be deferred until June. John actually has no problem with this whereas I can hear Bob hyperventilating. Why would I wait, it won’t affect Ciarán one way or the other etc. etc. No one knows how I’m going to react on this drug and I want to be well for him and I also want to know I’ll be at his graduation. I can fall apart, if I have to, after the bloody exams. A compromise is reached in that if the sentinel node biopsy doesn’t go ahead I’ll start sooner. John says that if I get
flu symptoms not to worry they’ll put me on paracetamol. Talk about underselling a drug. This guy needs to make an effort and get to know me, you don’t undersell me anything, you give me honest facts, I’m an intelligent woman it’s not going to put me off!

We leave and go for a long walk. I’ve decided that they’re good cop/bad cop. John delivers the facts whereas Sinead delivers the information. I’ve learned more from her than from him. Time will tell if I’m right.

It is an amusing set up in his rooms. You walk in the door and there is a room on the right hand side stating Medical Oncologist Consulting Room. The next door is an office with a waiting area of about 6 chairs. Two of us were called simultaneously yesterday, he has another 3 treatment rooms where we are put waiting. Therefore none of his patients never really meet each other. So you wait in your defined room, Sinead comes in and takes whatever notes she needs then leaves and puts the file on the outside of the door. John then arrives, looks at the file, enters, deals with you, leaves sends you up to pay and another patient is taken down. It’s like a conveyor belt. All very weird.

Got the start of another migraine when I got home, chilled out and watch something funny on the iplayer and hey presto gone – stress I think. Would you agree?

One Response to Good Cop, Bad Cop and lots of mixed messages

It’s very frustrating with medical people give mixed or worse still contradictory information, sometimes I wonder if they talk to each other or even attend the same training. You seem to have a good handle on the situation and they way your relationship with John & Sinead works.